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Ulcerative Colitis
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Posted 5/30/2013 6:56 PM (GMT 0)
Hi there,

I was just diagnosed with UC 2 weeks ago. I was passing blood and mucus in my stool for far too long. Finally ended up in the ER and they did a cat scan and saw that my left side of my large intestine was VERY inflamed.

They admitted me to the hospital where I spent two nights. The second day they did a colonoscopy on me and the doctor said that the left side was VERY VERY inflamed. He said I had UC.

I am now at home. I was taking some antibiotics for 10 days. Now I am on prednisone. I was taking 8 pills (40mg) now I am taking 6 (30 mg). I hate taking these. They make me have blurry vision.

I was suppose to take some other medicine but the insurance wouldn't cover it without a doctors authorization. And the hospital won't do authorizations. Grrr...

I am following up with a doctor tomorrow.

HOW LONG does this last?!?! I have NO energy. Still passing blood, mucus. Having to get up in the middle of the night to go to the bathroom. I just want to feel better.

I have no idea what to expect for how long this is going to last.

Very depressed and frustrated!! :(
Posted 5/30/2013 7:22 PM (GMT 0)
Well first off, if you're just using Prednisone, your symptoms will probably come back after you've tapered off the prednisone. You need some sort of maintenance therapy. You need to find a GI doctor that can authorize remission maintenance medication for you. This is of the utmost importance. Otherwise, I believe sulfasalazine is fairly inexpensive. There are also natural treatment options. Second, you should not be going down on the prednisone until your symptoms are gone. How long will it last? No one can say. Prednisone puts some people into remission within a few days. But often it takes weeks. Still some people fail to ever achieve remission or reasonably mild symptoms and need to have their colons removed (unusual, especially if only your left side is inflamed).
Posted 5/30/2013 7:35 PM (GMT 0)
Thanks for the reply. I am seeing a GI doctor tomorrow.

I am only going down on the prednisone because that is what the hospital doctor ordered. I tried getting into a gi doc sooner...but this one was the earliest.

I am just frustrated and want to feel better. Tired of being tired.
Posted 5/30/2013 7:42 PM (GMT 0)
Coaches Wife, the prednisone will help you to feel better. Lacaille is right - usually the recommendation is not to start your taper until you have seen significant relief from your symptoms.

You should talk to your Dr about 5-ASA medications, both oral and rectal. These are safe for long-term use and should help you maintain your remission once you get there. They can be used simultaneously with the prednisone. A small percentage of people are intolerant of this medication, but hopefully that will not be you. There are generics of both oral and rectal meds available (sulfazine and balsalazide, which are both oral meds, and rectal mesalamine 4g enemas).

Welcome to the forum.
Posted 5/30/2013 7:43 PM (GMT 0)
Keep reading this forum!!!!
Posted 5/30/2013 8:15 PM (GMT 0)
Thanks for the support and answers.

I will keep reading the forum for more information on how to live with this.

It is a blessing to know that I am not the only one in the world who is going through this. Not that I would wish this on anyone...but it helps to know I'm not alone.
Posted 5/30/2013 11:51 PM (GMT 0)
i'm cornfused (always actually) ?

you say you were just dx'd 2 weeks ago, but you joined in '09 with a dx of up the year before that ?

have you been on drugs or in remission since then ?

just curious -
Posted 5/31/2013 2:07 AM (GMT 0)
I'll bet, soystud, that Coaches Wife never understood that UP is a subdiagnosis of UC. My first GI (who did a sigmoidscope and diagnosed me with UP) never told me that either. Stooopid GIs. I fired that guy.
Posted 5/31/2013 2:40 AM (GMT 0)
Alarms go off when I hear the word antibiotics. Make sure you take a reputable probiotic to replenish your bowel flora. Antibiotics are fungal poisons, and although can be useful under certain conditions, can also be hazardous to ones' heath.

You may want to start an elimination diet. For me, because I suspected fungus was my underlying cause of UC symptoms (had been on antibiotics in my youth, lived in water-damaged/mildewy/moldy basement homes, birth control pill user), I went on an antifungal diet/program, pretty well eliminating all grains, foods with high sugars, yeast foods for a time since these feed fungus. After a few weeks, I was significantly better, and "healed" with no symptoms within a few months. Still symptom-free and med free 7 years later. I have since read of a co-relation with gluten and UC. There are many good suggestions/advice on this forum. Take time to read other posts and decide for yourself if you feel it is worthwhile to try some.
Posted 5/31/2013 2:45 AM (GMT 0)
You will be own your own when it comes to finding natural remedies and supplements, and also figuring out which foods to avoid--that's where this board is very helpful. Being really careful about what you eat will help you get into remission faster.
Posted 5/31/2013 2:54 AM (GMT 0)
kinda what i was thinking too kaz -

a bad deal made worse by ignorance or laziness -
Posted 5/31/2013 12:06 PM (GMT 0)
Coaches wife,

Welcome to the forum.

Sorry for your recent diagnosis.

Yes, UC sucks!

And unfortunately it's a lifelong auto-immune disease you will have to learn to live with.

At first it's overwhelming, depressing, makes you pretty pissed, but eventually after you've dealt with the stages of grief, you learn to deal with it.

The most important thing I think is to empower yourself with knowledge, so you can educate yourself, ask the right questions of the doc, etc...

Do you know if you've been tested for VItamin D3 deficiency?

There's a big correlation between it and UC, and it and depression too.

ALso, as Kim mentioned it is key to get some good probiotics while on antibiotics. But they must be taken 4 hours apart from the antibiotics.

There are also lots of  other things you can do, and if you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 5/31/2013 9:09 PM (GMT 0)
Ok...Well...I had ulcerative proctitus (sp) a few years ago. The doctor didn't really do much for me. And I cleared up and had NO problems for the past few years until just now. I did not like the doctor...and never really was informed of everything. So maybe it may have been a lack of knowledge or me just being ignorant.

As for now...I followed up with the nurse today. I have an appointment with the doctor in 3 weeks. I am finished taking the antibiotic. Starting to ween off the prednisone slowly. She called in for another medicine. Asocol. Pharmacy called and said insurance doesn't cover it. Waiting to see what they will switch me to. She gave me a weeks worth of samples so that way I am starting something.

I am just ready to get my energy back. So tired.

Thanks for your support. It really means a lot!
Posted 5/31/2013 9:13 PM (GMT 0)
That's good that the DR called in Asacol. Not sure why your insurance won't cover it - it's a standard medication for UC and has been in use for decades. The brand name drug is going to be discontinued in a few weeks or months - but the company is releasing a new, long-acting version. There are other versions of the same active medication on the market; your DR can prescribe any of them.

What should have happened two years ago is you should have been given medications to take for maintaining your remission. That would have been enemas (with the same active ingredient as asacol). If you achieve remission again (using the oral meds and the enemas) you should not stop taking the medication.
Posted 5/31/2013 10:07 PM (GMT 0)
Pred should be loading you with magical energy. I hope there's a maintenance med you can find that insurance will cover. Wish you well and Welcome to the forum!
Posted 5/31/2013 10:37 PM (GMT 0)
I am thinking that the reason why I am tired is because I am still loosing blood when I got to the bathroom. AND I have to get up about 4 times in the night! More like in the early morning hours....but still. It will be great once I can actually sleep through the night like a normal person. :)
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